Indeterminate Colitis Proctitis – Eleanor’s Story

Hiya on here for some guidance ans support to my recently diagnosed diseases and help and advice about pain management and urgency

I am a single mum of 3 kiddies ans am a mature degree student currently separated from my husband of 3 years

Her Colitis Symptoms:

Blood mucus urgency to.toilet dry eyes bloating pain in abdomen

Eleanor’s Story

Hiya I am in the beginning stages of my second flare.

I have had this for around 3 months and the last flare was over a year ago which had lasted for a year and resulted in my diagnosis.

I was wondering if anyone can advisee me any tips on managing the urgency and pain and weakness as I have a high demand uni course ans placement to attend ans it’s not possible at the moment with these symptoms. This box is telling me to continue h with my story so I will try not to bore you. An recently separated from an abusive unsupportive husband which I believe was adding to the disease symptoms. I am.trying to learn to run to help with my overall health and attend a gym at least 3 times a week.

I look bloated most days and have suffered from lower back and joint pain. I am in a state of limbo regarding my diagnosis as a flex sig showed indeterminate colitis buthe biopsy results were not consistent and the ibd nurse overruled the consultants diagnosis with an ibs and proctitis diagnosis. I disagree hugely as I am now symptomatic again and she couldn’t tell me.why the blood and mucus had been an issue for over a year if it was only ibs! I am very angry with her and not sure what to do about it nowas as there is only that hospital in my area to attend.

Can anyone recommend a diet to eat in a flare?

Or what to drink?

Are prebiotic any good? Tablet or the drink form?

Does anyone have any advice for me to ease this pain?

Thanks for reading this sorry if it’s all over the place and confusing!.

Currently using mezalasine rectal foam. Immodium. Buscopan and paracetamol

Some Medications / Treatments:

I avoid all green vegetables high fat foods and caffeine when flaring.
I try to exercise daily

22 Responses to Indeterminate Colitis Proctitis – Eleanor’s Story

Firstly, get someone to talk to about this. You say you don’t want to bore anyone. It isn’t boring anyone. Your health is your primary wealth. Counselling helped me to move forward.

Diet you can find all sorts of details but most people seem to follow the SCD, I don’t, I focus on my emotional wellbeing and that tends to sort out the rest of my body. I LOVE my carbs so no one is going to tell me to stop my toast and eggs for breakfast. Yum!

But there is no denying cutting out all forms of sugar really helps speed up the healing process.

It sounds like you have been through a traumatic experience one that needs proper acknowledgment and work to resolve. Good luck, the pain can reduce once you learn how to relax the mind. It’s hard going, but yoga, meditation, nice walks all help.

Oh thank you x I can’t cut out carbs they are a mainstay in my diet. I can’t have green vegetables too much onion and caffeine etc as it is if I have to cut out the carbsn I’m left with a very limited diet. I tried the low residue low fibre diet for one week and brought on horrendous constipation and I am only now recovering from that. I have no help with this disease atm due to the mixed diagnosis and am basically left alone to it and it’s scary and I just don’t know what level of pain or discomfort I am supposed to get to before phoning the ambulance! It’s ridiculous! As for exercise I love going to the gym and up until this new flare a few weeks ago started I was learning ro run and doing weights. Now I’m lucky if I can walk to the car and back without a nap! Also is it normal to vomit with the bowel movemwnts? I think it’s the pain and the pushing combined to result in the sickness? It’s a worrying complication!

I am so sorry you are going through a flare up. Firstly, are you able to ask for prescription medications and get what you need? I agree about something different than a suppository- in the USA we have Mesalamine liquid enemas given at bedtime and you hold the medicine in your rectum overnight. I did them when I had your symptoms and although it was difficult it did help. So did Codeine for the pain.
Try your best to reduce the stress in your life. With an ex and kids and school your plate is very full. Instead of running and weights try stretching and breathing exercises. Child’s pose helps the pain.
Also, take gluten and sugar out of your diet. Eat potatoes for carbs.
The most important thing is a proper diagnosis. Maybe you could go back and speak to a supervisor.
I hope you feel better soon.

Hi Eleanor,
If you have proctitis get your doctor to put you on sulofac 1000mg….its a suppository and if your flare up is pretty bad take one in the morning and one just before bed…If it’s not a bad flare up take one just before bed…if your flare up is bad and this just isn’t doing the trick ask your doctor about getting you on cortifoam and sulofac in the the liquid form. Both of these need to be taken rrectaly. The cortifoam in the morning and the sulofac liquid just before bed for 2 weeks. All of the inflammation will be gone. The reasoning for the liquid is because the inflammation is a little higher in which the suppository pill doesn’t get to. Hope this info helps you. This is currently what I’m on and seems to work and is much better then taking a whole bunch of crap with crazy side affects.

I have no idea. She’s phoned me a s said it’s a proctitis after he had written indeterminate colitis and starated me on meds. I have no treatment at the moment other than the salofalk my doc prescribed me. I have been lost in the system at the hospital now and will have to begin the diagnosis process all.over again it’s heart breaking.

And thanks for the meds advice Travis I am going to be going to the docs in the morning and pushing for sone alternative medications so this gets under control.asap x habent left the house for longer than a half hour in 2 weeks my life is on hold like

It’s a nightmare disease isn’t it! I’ve had left side colitis for 9 years. Last 4 years been bad. Having a severe flare since mid aug and just out of hospital on IV steroids. Now started on Infliximab but still very poorly and lost loads of blood. Been bed bound for over 6 weeks. I take Movicol to stop constipation but will stop those soon. I have been on a restricted diet, mainly sweet pots, carrots, protein, rice, cheese, eggs, porrage, rice crispies, occasionally bread. Soaking linseed and putting that in porrage is good for constipation too. The consultants are all about the next drug so you have to do your own research and trial and error regarding flare diet, we are all different so some things work for some and not others. Be gentle with yourself… and do not push and strain while on the toilet!! Rubbing the lower back helps and always a hot water bottle at night! You need some meds to get you in remission, good luck with everything x

Oh Allison I am.not as bad as you that sounds totally horrendous x x I can’t imagine being hospitalised as i am only 3 years in with this ans still in the diagnosis stages x your advice regarding In seeds I am going to take you up on as I am scared to death of that happening again x horrendous x at least with the frequent bm u can use vaseline and heat and get sone releif the constipation is crippling and so draining x I didn’t realise you weren’t supposed to strain as I saw somewhere to push whenever you csn to get it all.out! X x I started sone pred foam last night ans it worked very quickly last time so I am hoping and praying that’s the case this time x 3rd flare so far and Deffo the worst x x thanks foe the comments xx

I am so sorry you are going through a flare up. Firstly, are you able to ask for prescription medications and get what you need? I agree about something different than a suppository- in the USA we have Mesalamine liquid enemas given at bedtime and you hold the medicine in your rectum overnight. I did them when I had your symptoms and although it was difficult it did help. So did Codeine for the pain. That was back when the docs here were less restricted writing scripts for pain meds.
Try your best to reduce the stress in your life. With an ex and kids and school your plate is very full. Instead of running and weights try stretching and breathing exercises. Child’s pose helps the pain. Have your kids give you back rubs too.
Also, take gluten and sugar out of your diet. Eat all kinds of potatoes for carbs and just cut any junk foods.
The most important thing is a proper diagnosis. Maybe you could go back and speak to a supervisor.
I hope you feel better soon.

Yes 3rd flare in 3 and a half years x I am currently taking prednisone rectal foam. It’s like a miracle med for me so far. I have an urgent referral appointment in for a procedure to get diagnosed properly so fingers crossed I will know soon. Yes I think I am probably better turning to stretching for a while at least until I’m in remission as the running is just too bouncy for me at the moment! It’s annoying as I have been learning over a period of around 8 months and now all that will go and I will have to start from scratch.so annoying!

This time of year is always the worst for flares too. Seen my consultant today and discussed operation if Infliximab doesn’t work, sounds bad but when UC starts ruining your life you come to accept it. Hopefully it won’t come to that so going very steady. Do yr research and as said above cut out all additives, sugar and gluten if poss, cook from scratch, look into probiotics, l glutamine, aloe vera. My mistake has always been leaving the flare go too long to avoid prednisolne, trying other things that didn’t work and ending up on pred in the end. Good luck everone with the healing

I wish you well. With the decisions you have to male regarding your operation x x I can imagine anything would be preferable to a life of pain discomfort embarrassments and hospitalisation x I am so confused with all the diet Advie I just don’t have. Clue x have tested for coeliac and come back negative so not going to drop gluten just yet x it’s in everything imaginable and I don’t see how I will be able to live like that without serious training on nutrition and this disease x x currently experiencing constipation and the pred foam seems to be stopping me all together nowith x so another night/day of fun ahead I’m sure xxx take care eof yourself and thanks so much for the feedback xx

Ask to see a dietician and ask for diet info for UC flare at hospital when you are next there. It’s hard to cut out gluten… i haven’t managed it yet as i occasionally have bread. Even if you tested negative to coeliac you still may be gluten sensitve. I got a good book called The Diet Myth by Tim Spector, from amazon for under £5 which is very interesting. Hope you have a smooth night xx

Hi Eleanor.
its a tough road but can be managed. I’m 59 have had this colitis/ulcerative colitis since I was 25.
To manage the condition you need to understand yourself and do lots of research. Most GP,s will prescribe you medication and some of this will be helpful and others useless only you can determine that on based on what works for you.
I will suggest what has helped me:
Read “Wheat Belly Total Total Health” by Dr William Davis.
I say this because you need to eliminate as much as possible wheat and grains from your diet.if you don’t understand the scientific principles behind eliminating wheat there is little chance you will achieve the aim.
Look at and think about the principles found in the Paleo diet.
Eliminate all processed food
Eat “Paddock to plate”
When possible eat organic.
Drink lots off fresh water
Don’t drink any form of “soft drink”
Tea and coffee ok when not having a flare up
Peppermint tea very good
When having a flare up only drink water
Find a fresh probiotic formulated for IBS
Have only hard dairy (no soft dairy)
Research alkaline diet
Research food combinations ie not mixing carbs with protein etc.
introduce good fats into you diet like eggs , olive oil etc.
Get sugar out of your diet
See a psychologist.

The above principles have helped me manage my condition, at 30 I was to sick for an operation for surgery (thank God for no surgery) and weighed 65 kg.

I have been able to get back to Karate training , I now weigh 84 kg and recently were grade at 4th Dan black belt. So I recon the principle I have followed have worked for me. Will it work for you? I think its all about doing lots of research and understanding what works for you.
Good luck ,sorry no luck in it, its about your research and the effort you put in to finding what works for you.
Keep smiling

Thanks Laurie all wonderful tips for me x I have decided it’s time to concentrate on my diet as I eat so badly always have! There’s so much info I need to sit down with someone and work out a meal plan for my own guts ansmdt stick rigidly to it.I am afriad to eat anything atm as it all hurts me . I am caffeine free now and limiting garlic as these two things are also triggers for me alongside the onions green veg and too much fibre. I need a proper nutritionist to help me I’m hoping after my scope to talk to a professional asap. Thanks so much and I’m heartened to hear of your karate achievements! I just want to run! Xx thanks again

Brilliant advice Laurie and this is the road i am going on… gluten is the last one to go. I had my 2nd Infliximab last friday and it seems i am finally slowly turning a corner after 3 months severe flare. Wish i’d have done research years before but have done loads now and it all corresponds with your comments Laurie! Keep going Eleanor you’ll get there! Happy healing everyone

Hi to all u ucers, I pray for healing for us all. I was diagnosed with ulcerative colitis since 2015 June. I’ve been up and down with meds, the only thing that seemed to work for me was prednisone. My doc said IV had enough of that so I started humira in sept. I’ve had five doses so far with some improvement. I’m down to 8-10 movements from 15-17 times. I’m also using methotrexate so my energy level is very low I’m afraid to drive myself to work. I feel very weak. I need to come up with a diet for uc that works with a warfarin diet as I had heart valve replacement. I’m keeping the faith and taking it one day at a time.

Stress is definitely bad but we all have to put our bodies on the line for our families etc. I know it will shorten my life but we have dependents.

I had lower back pain for years and constipation/UC which both improved greatly with EVOO. Its the most healthy food in the world, proven to relieve pain (oleocanthal) and help UC in trials. A good quality early harvest extra virgin olive oil is a must. I take 15ml on an empty stomach before breakfast, lunch and before bed. It’s been the discovery of my life and does work for UC’ers though not all. It’s also great as you are adding something good and not eliminating something from your diet.

Recent Reviews

My Biography

Feeling Crappy to Feeling Happy eBooks

Jan 16, 2018byPrinolan Govender

City/country:: South Africa

I honestly felt like you wrote my biography. I've lived my life the same way you did, eating, drinking and partying without having to worry. I did have signs along the way as well but didn't take to much notice to it until the blood showed up. I was diagnosed in October 2016 and at the time my GI told me it had nothing to do with my diet, so I lived my life the same way I always did. I've been trying many different meds without little or no results. After my 29th birthday in June 2017 I started feeling more sick and the weight loss had started, I've always been a skinny guy and ever since I lost quiet a bit of weight which has been something that just makes me feel more uncomfortable. I consulted a Homeopath in October 2017 and she started me on the Paleo diet, while researching that I came across your site and the SCD diet which I started in December 2017. I didn't do any of the diets a 100%, but I did start seeing results. I went a bit off the rails during the festive season while traveling but I'm easing into the SCD diet again and plan on going 100% this weekend. UC has caused a lot of stress for me but I've come to accept it and look at it in a positive way. My goal is to eat healthy, put some weight back on and start living a normal life again. I haven't let UC stop me from living my life although it has limited me, but thats all going to change! Thank you for sharing your story and being an inspiration to all of us.

product0.3

Feeling lucky

Feeling Crappy to Feeling Happy eBooks

Dec 10, 2017byKathryn-Jane

City/country:: Vancouver Island, Canada

I found this to be a very funny, informative book. It made me realize how lucky I am, as well. I haven't suffered anything like the severity of symptoms Adam has experienced, for which I am grateful - but that's not to say I haven't known the usual UC misery at times! As a wordsmith and grammarian, though, I wish the book had been given a more thorough edit. Maybe in the next edition.

product0.3

Feeling crappy to happy

Feeling Crappy to Feeling Happy eBooks

Nov 21, 2017byLynn

City/country:: North Carolina

The book was so honest and forthcoming about UC symptoms. It was almost like reading my own story since this journey began for me 2 years ago (no remission yet). I was starting to feel pretty hopeless about this whole situation but Adam’s book gave me hope that I (we) can take control of UC. I have been following the SCD and eating what Adam ate while in a flare. I can tell a difference! Still sticking with my docs medical plan for now. But, I am hopeful that healing is coming and that diet is the key. Thank you Adam for continuing th share your journey!

product0.3

Thank you!

Feeling Crappy to Feeling Happy eBooks

Oct 06, 2017byJennifer

City/country:: Toronto, Canada

Thank you so much for writing your e-book. I'm glad I came across it. I learned a lot. I realized that I don't like my GI doctor and need to find another one. She hasn't helped me at all. As soon as I was diagnosed with a mild case of UC back in 2009 I knew that I had to visit my Naturopath. I was not interested in taking any medication. I was prescribed salofalk enemas and I tried a few but when you keep having to run to the bathroom it didn't make any sense to me. I was prescribed the pills as well. I sat down with my Naturopath and we went through the side affects. My symptoms were less than the side affects so I decided not to take it. It has been quite a journey and unlike Adam I knew it had a lot to do with food. I'm sorry you had to suffer so much Adam. I gave up pop and any carbonated drinks, deep fried foods and aspartame/splenda. This seemed to help. I now think I need to take things to the next level. I just came across FODMAP and what Adam suggests. I'm also looking into Keto or Paleo. My stress levels are less currently due to a less stressful job and I realized that has helped. I take supplements like probiotics, digestive enzymes, fish oil, etc. Thank you so much for sharing your story Adam. It makes me feel like I'm not alone in this.

product0.3

Bravo! We can all do it like Adam.

Feeling Crappy to Feeling Happy eBooks

Aug 29, 2017byBonnie

City/country:: Toronto/Canada

Thank you for what you have done for the UC community! No words can express my hope when I read your website.

The books are purchased for my 21-year-old son who has been diagnosed with ulcerative colitis 3 weeks ago. His case is mild to moderate and inflammation occurs on the whole colon. The GI doctor in Toronto here did not give us any hope of finding a cure.

Feeling Crappy to Feeling Happy is written in an intimate way to allow the readers to walk the brave journey with Adam.

After ready your book, it boosted our confidence of finding a cure through alternative means.

I have read through the recipes and circled the ones that are ok during active flare. There are not many of them. I am preparing meals based on the suggested recipes. I requested Adam to provide additional recipes if possible. He got back to me with a new website which has more recipes. It also has videos of the latest research studies on UC. https://www.nimbal.org/blog/recipes

Adam, thank you again for taking the time and effort to share your personal experience of conquering UC!

product0.3

Soooo thankful!

Feeling Crappy to Feeling Happy eBooks

Jul 29, 2017byDanyelle

City/country:: Sioux Falls, South Dakota

I read the book within a couple days and am so very thankful that I came across it! Adam's story helped me feel that I wasn't alone in this and being able to relate was comforting. I'd always been a healthy child growing up and so having this occur right at the beginning of this year has been a battle. Luckily for myself, it wasn't as bad as Adam's recovery. This book led me to the SCD and book "Breaking the Viscous Cycle" and diving into the reading and research I want and need to know. Along the way I also came across the book "Two Steps Forward, One Step Back". I plan on taking what I've learned and applying some diet/lifestyle changes to then become medication free!

product0.3

Not alone

Feeling Crappy to Feeling Happy eBooks

Jun 15, 2017byDeidre Dixon

City/country:: South Carolina/USA

I was only recently diagnosed with UC and had so many questions (and was so scared). This boy I was a godsend. Adam's sense of humor, directness about symptoms, suggestions, personal success with SCD and recipes gave me just what I needed to get my hope back. Highly recommended.

product0.3

4.75.0116116I honestly felt like you wrote my biography. I've lived my life the same way you did, eating, drinking and partying without having to worry. I did have signs along the way as well Feeling Crappy to Feeling Happy eBooks

Please Read

***This website is intended for informational purposes only. It is not in any way a substitute for advice from your doctor or physicians. Consult with your doctor before making any decisions based off the information from this website.*** Here is a page to other resources
If you have not already, you MUST read and agree to the Terms of Use and the Privacy Policy before continuing to use this website.